Huntington's Disease Support Group
Huntington's disease (HD), formerly known as Huntington's chorea, is a rare inherited genetic disorder characterized by abnormal body movements called chorea, and a reduction of various mental abilities. The symptoms of Huntington's disease occur gradually over time - there is no sudden loss of abilities and it is hard to determine when symptoms initially occur.
My mother has HD and Ive known I was at risk for many years but it is now hitting me hard and Im having a hard time coping with the uncertainty of my future. How do you get past the fear and the uncertainty? It makes me feel so isolated.
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I haven't written in my diary on my computer since May because I thought that my computer was dying. I got away from writing but my computer is hanging in there. I think that I will start writing in it again. It's so therapeutic.
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First, I hope everyone is doing well, and continuing to fight that good fight! Keep up the great work on yourselves; I'm rooting for all of you!So, I started doing therapy at the beginning of the year, when I was in my most depressed state, but with my therapist, I made big changes and steps in the right direction. But, over a month ago, she couldn't take my insurance anymore, and I had to stop...
My awareness of HD comes through my husband. He tested negative but his mother and both of his brothers tested positive. Hubs and I both feel like we suffer HD by proxy and well. . . Getting past that fear, uncertainty and isolation is no small feat, even from the survivor point of view.
The Huntington's Disease Society of America (HDSA) has proven to be a great resource for the entire family. We attended the national convention in Chicago last year as well as several of the Team Hope Walks. and the camaraderie is wonderful. This year's convention is in LA in June. In addition, there are support groups and quite a few other resources. Here is a link to their web site.
http://hdsa.org/about-hdsa/
This just might be the slowest moving forum on DS. It is hard for me to remember to even check it for responses. Feel free to send me a private message if you want more dialog on the subject. I know I do. It's a hard subject for easy conversation. I feel affected, whether it's appropriate, or not.